Okay guys, I’m going to attempt to keep this introduction short and to the point but we all know how that normally goes. Does taking the time to say it, or write it in this case, work against this goal? I feel like it does? Here I am, unironically delaying the introduction, definitely not keeping it short and I have yet to get to the point. Oops.
I often mention when the subject comes up that PCOS is so widely complex. My PCOS symptoms and experience might look entirely different with a fellow cyster. You get insulin resistant PCOS, you get lean PCOS, you get constant cyst PCOS and the list goes on and on. PCOS truly is a gift that keeps on giving. The other day I found an actual black as night, a bit too long for my comfort, chest hair. Smack bang between my titties. It stood out like a sore thumb. I called my husband to show him, and he called it cute. I plucked it and studied the little hair with a chuckle. Thank you so much PCOS, I really didn’t need something else to feel self-conscious about. The acne and weight gain are more than enough, thank you very much.
PCOS is so incredibly confusing and trying to figure it out is a mind fuck. Where do you even start? Some of the ladies has seen great success on the Keto diet while others noted no change, heck some saw a negative change. What I’m trying to say is what works or helps me isn’t going to work and help another lady with PCOS. What I find so absolutely wonderful about the internet though is that we’re able to connect with others on the same metaphorical boat, read their story and learn a thing or two. We can then walk away feeling less alone and hopefully a tiny bit hopeful that one day we will find a way to combat those terrible symptoms.
I stumbled onto Jess when I was searching for a possible cyster to collab with. I get quite a few newly diagnosed and completely lost PCOS ladies on my website and I wanted you to have another lady to connect with. I know it’s so hard to find someone real. I don’t know about you but I appreciate real, here is the good, the bad and the really ugly type of content. I don’t want to read blogs where you have everything figured out. I want to read blogs where you share the in between part. You know nothing, but you’re on the journey to hopefully find some answers. I want to read your bad days. I want to feel less like an alien and a part of a community that just gets it. A community that understands that you’re not unhinged because you started to sob like the day you were born after the TV remote fell off the couch. Jess talks about her experience with PCOS on her blog The Good In Everyday. It doesn’t end there though. She has opened up her platform by having conversations with multiple women who struggle with a wide range of struggles. The conversation topics range from ADHD, Disability, Mental Health, Suicide, IBS, Transitioning, Body Positivity and so much more. It’s empowering to read these blogs. I hundred percent recommend you give it a glance.
It’s safe to say I fell in love with Jess’s blog and I jumped at the idea to possibly have her on my website. She responded and well, you can guess what happened. So…enough about me. I’m going to hand over the reins to Jess.
I’m Jess, a twenty-five-year-old writer currently exploring my new home of Sydney with my fiancé, Jack. Originally from England, I left the UK in December 2018 to travel America and Australia. Back home, I used to be a primary school teacher and LOVED it, but to be a writer has always been my biggest ambition so I used my time travelling to pursue my dreams.
My PCOS diagnosis story:
I was officially diagnosed with PCOS in July 2018, but really, I could have been diagnosed a lot sooner. I had always had irregular periods and my body hair has always been dark, thick and excessive. I used to be incredibly self conscious of how hairy I was, going as far as using hair removal cream on my arms to hide it. When I was 16, I had two instances of ovarian cysts, both of which I went to the hospital for. At that point, I feel like more investigation could have been done, but instead I was just told to go on the contraceptive pill. I was on the pill happily until summer 2017. I had never had any side effects from the pill – my skin was clear and I stayed the exact same slim weight. All of a sudden, I began to get horrific headaches. When I went back to the doctor, I was taken off the pill immediately and decided to have a bit of time away from using a contraceptive. When I was off the pill, I noticed how I could ‘feel’ properly. I hadn’t realised at the time because I had been on it for so long, but I was suppressed by the pill, almost as if I was living within a very small emotional range. Realising how much the pill dimmed my emotions and flattened me out as a person made me not want to go back on it at all. However, after having two periods, I then had a stretch of over six months without a period. This worried me enough for me to go back to the doctors, who took my bloods and sent me for an ultrasound. I remember being terrified of the ultrasound because it was an internal one, but I it wasn’t as bad as I had told myself it would be. The woman performing the ultrasound told me there and then that it was a pretty clear diagnosis of PCOS and my bloods later confirmed it.
I was pretty numb at my diagnosis. I always suspected from my problems in my teens that there might be an issue, but I didn’t know much about PCOS other than you can’t have children if you have it (a myth, but one at the time I thought was true). I remember crying and thinking that my future wouldn’t be as I had hoped. I had only been with my now fiancé for a few months at that point in time, so telling him when we left the hospital together scared me. I worried he would want to break up, but he was the opposite and was so incredibly supportive. In a way, finding out such big news so early on cemented that we wanted to be together and made us stronger as a couple.
To be honest, when I was first diagnosed, I didn’t really do much. I spoke to a few people who had PCOS, all of whom had managed to have children, and that was enough to appease me. I was told that the only way to control PCOS was to use the contraceptive pill and so I tried three different ones – one gave me horrific headaches, one made me gain a over stone in a month and the other was the one I was previously on and once again caused headaches. In the end, I said I didn’t want to be on any medication and my doctor agreed, telling me to come back if I ever wanted children.
I left the UK in December 2018 to travel and continued to live as I always had – eating whatever I wanted, doing whatever I wanted. I’d never been told much about PCOS and I found that there wasn’t a huge amount of information out there, although I admit initially I did very little of research. My diagnosis was so ‘you have this and unless you’re on the pill there isn’t much you can do’ that I didn’t understand all of the alternatives and implications of just carrying on as I always had. Whilst in Australia, my periods stopped again so I went back to the doctor. It was at this point thanks to the advice of my GP here and the gynaecologist that I saw that I realised I could help myself and that everything I had been doing was not good for me. I had gained weight, something I put down to stopping my active job as a teacher to pursue a writing career, but the weight wouldn’t go even when I tried to limit my diet or exercise. Having always had clear skin, I now had spots around my chin and mouth, I always felt just a little bit tired and my periods were painful.
How I manage my PCOS now:
I manage my PCOS through the diet and exercise changes I have made. Whilst I still feel like I can improve on this, I know that continuing to make these steps forward is something I want to do. I’m only at the beginning of my ‘managing PCOS journey’, but if I am already seeing and feeling improvements then I know that it is one to continue.
My PCOS diet:
Changing my diet is something I have only started since September, but I have already noticed a HUGE difference in how I look and feel. I have limited gluten because I didn’t want to cut it out completely in case, I developed an intolerance, and I have limited my dairy intake to the point that I have pretty much cut it out. As a vegetarian, my diet was never particularly bad, but I did eat a lot of pizza, pastas and cheese… I also had a sweet tooth! Swapping to things like gluten free pasta and dairy free cheese as well as upping my fruit intake has made a big difference. My skin is clearer, I feel less bloated and I am not as tired. Part of me wishes I had made these changes sooner because the difference has been so stark.
PCOS changed the way I look at and plan my future:
It has made me worry about having children more. Before, I think I was a little naive to the idea of fertility struggles. Pregnancy seemed to be one of those things that happened if and when people wanted it to. Of course, I knew about miscarriages, IVF and had heard of PCOS, but really, I was just naive to it all. I was 24 when I was diagnosed, so having children wasn’t even on my radar at that point, but PCOS has made me think of them more seriously.
I know that if and when I am ready to ‘try’ for a baby, I would go to a doctor sooner if nothing happened after a few months than if I did not know I had PCOS. Other than children, it’s just made me appreciate what I have – a brilliant, supportive fiancé, wonderful family and friends and a life I am proud of. You never know what is going to happen and nothing in life is definite, so I try to take a step back, worry less and just enjoy it.
How I’m ‘treating’ my PCOS (Supplements/Medication):
I don’t take any supplements or medication but, from following natural remedy PCOS accounts on Instagram, I am looking into taking zinc and other supplements.
One of the things PCOS has really disturbed for me is my sleep. Whereas before I could sleep in, sleep through the night and loved a duvet day, I now wake up throughout the night. This has been really hard for me as I wake up feeling shocking which only adds to the feeling of fatigue. I’ve used some natural remedies that I have found really help – Lush’s Sleepy cream which I rub on my chest and wrists before I sleep, and Wilde Blends Sleepy aromatherapy oil which I put on the sole of my foot and down my spine. I can honestly say that using these has made such a difference to my sleeping pattern and I cannot recommend the products highly enough.
I think whatever works for the person is how they should treat their PCOS. Birth control worked for me whilst I was on it, but I feel that really it just masked my symptoms. I prefer being off medication and working with my body to figure out what it needs and what I should do, but that might not be what works best for someone else.
My PCOS insecurities:
Having always been the same, thin size, the weight gain and struggle to lose it has been hard. I write about body confidence and I have got a lot better with mine over time, but initially seeing someone I didn’t recognise and having clothes that don’t fit was hard. Some people say to me ‘but you’re still thin’, but for me gaining 2 dress sizes in such a short space of time after pretty much 10 years of my life being one way was hard. I still struggle now, but it’s not as bad as it was.
Why it’s important to me to write about PCOS on my blog:
As with everything I write and share online, I try to be honest and reflect my reality. This is just a part of who I am, so on a very basic level it is just my online life mirroring my personal life.
On a deeper level, though, I like to think that by being open about my PCOS experience I might help someone else. When I was first diagnosed, I did little to research and genuinely believed I only needed to think of PCOS when it came to wanting/having children because that was the impression doctors had given me. It was only when I stumbled across pages online that I realised how much PCOS impacts and also how much I could do to help myself. I’d like to think that someone else who has just been diagnosed and who doesn’t fully understand what it means might stumble across my page and that my words might help them. Just reading other people’s experiences and thinking ‘oh yeah, me too’ has made the world of difference to me, so if I can do that for someone else then great!
My advice to my fellow cysters, especially those newly diagnosed:
My main bit of advice would be to read other people’s stories. Whilst no two PCOS journeys are identical, for me it helped me to realise that other people had headaches and I didn’t need to worry about them as much as I was or see that yes, other people had children even with PCOS. I am someone who Googles things and tends to lean to the worst health outcome, so I found that Instagram accounts from PCOS nutritionalists and people with the condition have helped me more than random Google searches that only convince me of the worst.
Two of the accounts I follow on Instagram who have really helped me are @pcos_to_wellness and @pcos.weightloss. Even if you don’t want to lose weight, @pcos.weightloss has great tips about feeling good and working with your body and @pcos_to_wellness is so open and honest about struggles with acne and different conditions that for some people are relate to their PCOS like bruxism and dermatitis.
Some of the PCOS myths I’ve heard:
One of the most damaging things I have heard is that you can’t have children if you have PCOS. Being told this at 24 was awful and I can’t express how much I cried over it, how much guilt I felt at my partner’s future perhaps not being what he imagined. Over time, I have realised how wrong this is. Yes, having children might be difficult. Yes, you might need IVF and yes, it might not happen for you at all – but PCOS does not mean you cannot have children. I follow so many people who are either undergoing IVF or who have made changes to their diet and health routine and have become pregnant naturally. PCOS might make it harder, but it’s not impossible. I find knowing that a comfort and I wish more people knew it too.
I also wish I had been told about insulin resistance. When I was diagnosed, PCOS seemed like a blanket term – you have it and everyone with it is the same – this is not true. PCOS differs from person to person, some people’s bodies are insulin resistant whereas others aren’t. Knowing which type you have will help you manage your diet and exercise. For example, I know that my exercise needs to be regular, low impact exercise like yoga, Pilates and walks. Even though I don’t have insulin resistant PCOS, I don’t do high intensity exercise like running or HIT sessions because I know that’s not what will work for my body and could cause me damage.
My two cents on the argument that PCOS patients are having to basically treat themselves because there is a lack of understanding and research in the medical community about PCOS and other conditions like endometriosis:
I have to say that my experiences have made me agree. My doctors were great at diagnosing me, but then that was it – I was offered a contraceptive pill or nothing. I didn’t know about insulin resistance, I was never given an information leaflet or even a website recommendation, so I walked away clueless but knowing that I didn’t want to be on a contraceptive pill.
Knowing what I know now about PCOS, I realise how wrong this was. There were things I could have done to help and there is damage I could have done to my body by not doing them. I wish I had been told the advice I have been given in the last few months straight away so that I was better informed, from knowing what foods to try, what to cut down on, what exercises to do. Women are teaching each other how to manage things and offering support which is great, but I sometimes worry about the validity of the advice when I am recommended things like supplements as I feel wary about putting things into my body without knowing if I need them.
Being a part of a community that freely shares their health journey, and talk about important topics is empowering:
I really enjoy participating in the discussions and reading advice and tips from other people. I worry – a lot – so reading other people talk about headaches or aches and pains or tiredness really puts me at ease. PCOS has so many symptoms and effects other than the basic things like excessive hair growth and irregular periods which I was never made aware of before, so having that reassurance and being able to reassure others is great.
I also think that it is important for women to talk about these conditions so that the medical profession listens and advances in treatment, understanding and diagnosis can be made. For too long, women have minimised their pain, suffered in silence or put up with partial diagnosis’s, but to see that changing feels really empowering. My hope is that in the future, no one has to have a half-hearted diagnosis or walks away feeling confused and unsure of what they can do to help them self. If I can be a part of helping that day come sooner, then great.
I hope that my PCOS story helps someone out there feel like their diagnosis is not the end of the world, because it’s not. You might have to change how you look at things or how you do things in life, but it will be okay. PCOS is a part of you, but it’s not all of you.
Okay, I’m back. Did you miss me? I hope you enjoyed this blog. I truly loved working with Jess. She is super awesome, but you already know that by now. I’m going to round this one off but before I go – You can find Jess on Instagram @thegoodineverydayblog and of course subscribe/follow her blog here on WordPress.
Thank you so much for reading and I will see you in a click!